Friday, December 2, 2011

ManyofyouknowLinda as a friend, a colleague, as an adult. Youknow what a special warm caring person she was. I would like to share with you something of her childhood.

She was the most persevering, determined youngster you could meet. Life often presented challenges, because as youknow she was not the most coordinated. However, she overcame most obstacles.

Nobody worked harder to learn to ride a bike than Linda. She almost destroyed her father both physically and emotionally, but she finally rode a two wheeler.

She would spend hours holding on to the fence with one hand and bouncing the ball with the other in order to turn her leg over the ball. Those of you who grew up in NYC would know that is how one played A my name is....

In closing, I want to share what she meant to me as an adult friend. It was not unusual for her to phone me 3 or 4 times a day. The last call always ended with "I'll talk to you later." and she often did. The phone line was our umbilical cord that was never cut.

She had a wonderful ability to laugh at herself and was a pleasure to be with. I will miss her dearly.

I hope, and never expect to, offer another eulogy to a child. So I close by saying, Carla and Paula, that you are very precious to me. May you enjoy long and healthy lives. I love you.

Thursday, December 1, 2011

My mother’s favorite thing to ask me was if I knew how much she loved me. She’d ask it five minutes after we had fought over what time I should be home or whether I had applied enough sunscreen to my back in the summer. She’d ask me the question after a soccer game when my bangs were matted to my head and I was tired and cranky. She especially liked to ask me this immediately after she had infuriated me in ways that only a mother could. She used to say that growing up with two sisters had taught her how to get in the last word of every argument.

As good as my mother was at pushing my buttons, she also knew exactly how to get me to open up. Driving down the road on our way to Kohls with her purse stuffed full of coupons, I would find myself telling her everything that had been happening in my life. My afternoon walks to class turned into “our time” as she called it and she would get very offended if I forgot to call or was running too late to talk. When I did make it out to class on time, she would demand to know everything that was happening in my life, how many green vegetables I had eaten, if I had read for my English class that morning, and if I had remembered to brush my teeth. By my sophomore year in college, my mother could tell you both my roommates schedules better than I could.

Sunday night was family dinner and being late to the table was non-negotiable. First to be served was always the vegetable followed by a threat that if we didn’t finish our broccoli we couldn’t have spaghetti. Dinners would always start out the same with my father trying to engage everyone in an intellectual conversation and my mother interrupting to announce that the pizza “might not look as good as it tastes”. She was however, a Jewish mother at heart and if we weren’t full by the end of the meal, she hadn’t done her job.

School lunches were also a big production and the highlight of most evenings. My brother would eat anything that she gave him and she would often boast that she could throw together anything last minute. I, on the other hand, had a much bigger problem eating “the stink fish” tuna or peanut butter and no jelly sandwiches. Those nights would often end the same way with her telling me “next time, you make your own lunch”. Somehow, I remained the only kid in high school whose mother still packed her lunch every night. I was also probably the only kid in high school who still got notes in her lunch and by the end of my senior year I had amassed a large pile of sticky notes with messages such as “good luck sunshine” and “love yah tons” on them.

Through everything, my mother managed to carve a place in the heart of every person she ever met. The nurses that took care of her at UPenn would crowd into her room and she would give them advice on finding a nice husband. The walls of her hospital room alone were covered with enough cards and letters to fill a book. My mother loved the attention, she loved the visitors, and she loved hearing all the news from back home. She fought for a long time because she wanted her family to know how much she loved them. So here’s to you mumsie, I love you.

Wednesday, November 30, 2011

Nothing was more important to my mom than family and she expressed that commitment in her own special way.

When the latest preparation of a meal didn’t taste quite right, it was usually because she had been tinkering with the recipe to align it with the latest nutritional theory. The first iteration was always great and then the adjustments would begin. White flour would be replaced with whole-wheat flour and then spelt, butter would be replaced with yogurt which would then become water each following the theory that anything that tasted good probably wasn’t healthy enough. After a few weeks the original dish would have inevitably been transformed into a highly nutritious yet tasteless mush sprinkled with flax seeds (her favorite garnish).

Every time a confused Greyhound driver witnessed my attempts to navigate the Port Authority terminal while juggling a half dozen chicken thighs and a jar of homemade tomato sauce, you could be sure my mom had been at work, fighting to ward off the horrors of processed food. In the hour before leaving she would begin rummaging through the fridge and throwing everything in sight into a series of plastic grocery bags. It didn’t matter if I already had two suitcases, plenty of food at my final destination, or the only containers she had were leaky Tupperware. She was determined to make sure I would not starve.

If I ever temporarily misplaced my phone I was sure to find it with a series of missed calls from my mother complemented by a full suite of voicemails, emails, and text messages. She hadn’t heard from me in a few hours and wanted to make sure I was OK. When she felt I wasn’t being sufficiently responsive she would begin calling whomever I was with. It was almost a weekly occurrence where I would be told by a friend, your mom is looking for you.

Summer days often began with my mother chasing me down the sidewalk, an industrial sized container of sunscreen in her hand. She wouldn’t be satisfied until my pasty complexion was completely obscured by a thick layer of SPF 100. After that came a shirt, a hat, and strict instructions to stay out of direct sunlight. This was a routine she employed every morning between May and October as she had seen the damages that the sun could do.

Everything was done with an eye towards protecting those she cared about.

Every night, on my walk home from work I would call, and she would tirelessly quiz me on my day and any new developments in my career. When one of my early reviews made a mention of blocking and tackling she conducted extensive research into how this idiom should be interpreted and exactly how one would tackle in the office environment. She enjoyed hearing anything I had to tell her and while it was debatable whether she ever fully understood what my job entailed, it was always clear that she was my biggest fan.

Even in her final days, my mom never gave up looking out for those she cared about. Every visit entailed a complete breakdown of what everyone had been up to and every time I purchased a sandwich from the Potbelly Sandwich Shop attached to the hospital, she would remind me of the coupons she had at home and how I should take those next time I visited.

The hospital staff always mentioned how lucky my mother said she was to have her family, but in reality we were the ones who were lucky to have her. We love you mom.

Monday, November 28, 2011

We had 27 years to say what needed saying to each other, so there is not much I need to say here. You know I loved you. Although I never said it enough to satisfy you, I showed it in every other way and I know you heard those declarations. I will say it again just because you loved to hear it: I love you, I love you, I will always love you.

You also asked, I don’t know how many times, “am I your soulmate”? Being pragmatic and literal, I always thought it was silly question. If you can’t define a soul how can you define a soulmate. Also, if being a soulmate means fitting together perfectly with a person – well, perfection is an unattainable ideal. All this kept me from answering “yes” to your question. Now that you are gone however, I think I can give you a better answer. You were close enough to perfect for me. Wait for me, soulmate. As I whispered to you at the service yesterday; I’ll join you again when I’m finished here on earth.

I know you are in a better place now, and as Emily says “you’re going to keep an eye on us”. I hope and expect that you won’t be disappointed. Robert is Robert, only more settled, more responsible; an anchor for Emily and I. You were always proud of him growing up – I think you’ll be proud of him throughout his life. Emily took your passing hard, but she will work through it alright. You were “best friends” these last few years, and that will be a solid foundation for her life. Having them both around has been like having you around – that is a blessing I need.

Your family and friends have been amazing. I couldn’t have survived this without them. Heather called you a “sweetheart”, and the rabbi called you a “good soul”. They are both right – I would call you a “sweet soul”. I see it in your mother and sisters. I have been lucky to know you and the sweet circle of people that gathered around you.

Finally, you should know that your memory surrounds me alike a cloud. Nothing that I see or hear or touch doesn’t bring you back. I’ve done a lot of crying, but it is a good kind of grief. And if there is some way for the feelings of mortals to reach heaven then you are having a good cry too. But it is a good thing that unites us, and though we are parted now we will meet again, and cry again – but then it will be crying for joy.

I got a call from the hospital last night at 10pm to tell me that Linda had passed away.

Linda's sisters are trying to arrange a burial plot for all three families. Linda's family has been great, and I have thankfully had nothing to do but make general decisions. Love to you all.

-Lee

To every thing there is a season, and a time to every purpose under the heaven:A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;A time to kill, and a time to heal; a time to break down, and a time to build up;A time to weep, and a time to laugh; a time to mourn, and a time to dance;A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;A time to get, and a time to lose; a time to keep, and a time to cast away;A time to tear, and a time to sew; a time to keep silence, and a time to speak;A time to love, and a time to hate; a time of war, and a time of peace.What profit has he that works in that in which he labors?I have seen the task, which God has given to the sons of men to be occupied in it.He has made every thing beautiful in its time: also he has put eternity in men's hearts, so that no man can find out the work that God does from the beginning to the end.Ecclesiastes 3

Friday, November 25, 2011

Gordon (cousin) and other Philadelphia relatives visited in the morning. Gordon said that Linda's eyes fluttered when he called to her, but that was the extent of her awareness.Carla, Paula and Barbara visited Linda this afternoon. Robert drove down from Allentown with his girlfriend, Julia. Linda looks more peaceful then before, but still has the oxygen mask and the morphine drip. She has jaundice skin again. They talked to someone about hospice care. Since we want her in Allentown they will have to evaluate her condition to determine whether she can survive the trip. The exact time and options for the move and the hospice care will be finalized on Monday, assuming that she can be moved at all.

Lee, Robert and Emily drove to Philly in the morning, arrived about 11:30. Linda has an oxygen mask, but is still breathing hard. Her eyes open slightly when we call to her, but there is no other sign of recognition. It is very hard seeing her like this. Emily sits and tells Linda a long string of anecdotes from their time together - "remember when...". I finally get her to say goodbye. Rob and I do too.

We drive to Carla's house in Oradell, NJ. Just before we arrive I receive a call from U Penn. Linda seems to be in more pain, and they suggest that we start a morphine drip to control it - I tell them to go ahead.

Family meeting with Marcia, Carla, Joel, Paula, Pat, Barbara, and Robert: Marcia begins by reviewing the last conversation she had with Dr. Loren: Two days ago there were essentially 3 options; 1. go on with increased steroid treatment hoping for a breakthrough, 2. target the pain, while keeping other IV fluids going, and 3. target the pain, while reducing/eliminating the IV fluids. Marcia points out that these options are now moot since Linda is deteriorating faster than expected. Linda's liver is failing (bilirubin is at 24 now) and her gut is still inflamed. Worse yet, the GVHD has started to affect her lungs and she has a new infection. Everyone agrees that Linda's comfort and pain elimination are the first priority. We learn in a call to U Penn that stopping the steroid treatments will not increase Linda's discomfort, and we tell them to focus entirely on pain relief. It is decided that if she can be stabilized, we will have Linda moved to Allentown as soon as possible. The hospice people will be around tomorrow to evaluate her for movement to Allentown.

Emily visited Linda along with her friend Megan Steber - Tim Steber drove them down. A pretty bad day for Linda. The only bright spot was that she woke for 10 minutes, and interacted with Emily, smiling and obviously understanding what was said. This was very good for Emily emotionally, but does not change Linda's medical situation. They arrived home mid afternoon.

Robert arrived home late tonight from NYC. We will all go to U Penn tomorrow.

At 1:15 am I got a call from Linda's floor. Dr. Bish said that Linda's breathing was at a high level, and he wanted to move her to the ICU, where they could insert a breathing tube. In the ICU she would also have access to other life extending measures. I told him that there should be no breathing tube, no resuscitation, and no machines that would take over vital functions. Linda had always been clear that she did not want to be artificially kept alive, and with her chances of recovery so minimal, it seemed the only answer I could give. I felt that she was there with me saying "enough"! Dr. Bish understood the situation, and said they would keep her where she was, and make her as comfortable as they could. The rest of the family, on hearing the story in the morning, agreed with the approach. Unfortunately, I couldn't sleep after that.

Emily and I visited Linda from noon to 7pm. It was a bad day. Linda is uncomfortable, sleeping fitfully and moaning occasionally. She woke only once and there was little recognition in her eyes. It was very hard on Emily since Linda was practically "not there". We spent most of the day sitting outside the room because it was so painfully to see Linda in pain and discomfort.Late in the day I met with Dr. Loren, the resident physician, the palliative care physician, and 2 nurses who have been central to Linda's care recently. They outlined Linda's situation: the chances of her recovery are very slim (less than 10%). She is in considerable pain, and the palliative care team thinks that it is affecting her mental status. She has been losing ground over the last 6 weeks, making some progress, but then losing more ground then before. She is weak now, with less energy to fight. They asked that the family discuss the situation, and give them some idea of the direction treatment should go at this point. I promised that we would meet during Thanksgiving Day and make specific decisions.Emily was not in the meeting, but knew that the news was not good. We both had a good cry before we left. We survived the 2 hours drive home by having Emily review out loud all she knew about anatomy. Neither of us have been hungry today, and sleep was uneasy for both of us.

-Lee (written on Friday Nov. 25 - I have not had the heart to write this week)

Tuesday, November 22, 2011

Notes from Lee:
Marcia visited this morning and gave me a call at noon. She had talked with Dr. Luger, the attending Physician who said that there was no improvement today. The CMV virus was still threatening, and since the steroid treatment for the GVHD was depressing her immune system she was having trouble fighting off the virus. Marcia asked me to contact Dr. Loren for her opinion.
I arrived at U Penn around 2pm. Linda was sleeping fitfully, as thought she was dreaming. I massaged her feet and stroked her hair, but she didn't wake up. She was humming (or moaning) while she slept (it was hard to know what this came from since it did seem like peaceful humming at some points, but worked up to moaning when she was obviously in pain). At 5 supper came, but she continues to sleep. Shortly before I left she woke looked at me with recognition, and then went straight back to sleeping-humming-moaning.
I left at 7 to pick up Emily at Harrisburg; we didn't get home until midnight.
-Lee

Saturday, November 19, 2011

Linda had her eyes shut when we arrived but woke as soon as she heard us. The nurse came in also to check on her. The nurse said she had not wanted to eat anything today and refused her pills. Linda was alert- told us Robbie had been there and was happy to see him and asked if we saw him. I am assuming he had left shortly before we arrived or Linda thought so. Linda seemed more tired than last Saturday in my opinion but asked a lot of questions as usual. She wanted to know about everyone and everything and we had a good conversation I thought- sometimes while her eyes were shut! She is really looking forward to seeing Emily and knew exactly when she is coming home, etc.

I had brought some small jars of baby food. Checked with the nurse and she said that was fine for her to eat and hoped she would. Told Linda what they were and she seemed somewhat interested, So the nurse asked if we could try to get Linda to take her pills with some. Opened apple and blueberry. She actually said it was "delicious" and I had my hopes up we could get some in her. With coaxing she took all three capsules form the nurse and I and half jar of the food- doesn't sound like much but it was good she got the pills down the nurse said. She asked again later to try more and took two small spoons. I had hoped for more. Almost seemed to me that she wanted to eat more but seemed so tired out.She said again it tasted good. She didn't touch her dinner plate at all. Maybe tomorrow earlier in the day she will do OK I hope. She promised me she would try again to eat. I asked if I was annoying her and she smiled- and said "no"- but I bet she was thinking otherwise! I got about 6 or 7 spoons of nectar cranberry juice down too. Lots of effort for her it seemed. I left several other jars of different baby foods there- maybe she will try again.

She complained of being hot- put less blankets on her. Got heat turned down, wiped her forehead with a cool cloth. She seemed to get more comfortable. One thing we noticed is that she seemed to complain far less about pain than last week- only asked once to push pain button. So either she is really in less pain or on other meds that masked it from us, or maybe had more during the afternoon. Hoping it is the "less pain" option?

There was a note on her table addressed to you Lee- Linda read it and seemed interested in it - I held it up for her. Lee- it said Dr. Loren had been in today and thought Linda looked good- said she would be in tomorrow (Sunday) also. I am assuming Linda was asleep for that visit or didn't remember it. The note is sitting on her bed tray for you.

We left her about 8:15 - she was beginning to doze and said she was comfortable. The night nurses had done their checks too before we left.

We arrived around 1:45, having just missed Dr. Loren who left a note saying that Linda looked good. Linda was sleepy but coherent. She refused to take the pills from her nurse, however after a while she accepted a single pill with ice cream. Although for the most part she was quiet, when pushed on having some juice or pills, she was able to yell loudly to leave her alone.

Her hands are still swollen, and she looks somewhat jaundiced. She had some stomach pain, and her pain button was pressed. She kept asking about how many pills she needs to take, then arguing and saying that no, she was not going to take them.

They started IV Tacrilimus today for her GVHD. It's the similar to what she was getting orally, but she was probably not absorbing that much due to her GI issues.

Friday, November 18, 2011

- Got an early start, thanks to Larry and Marcia's hospitality. Arrived at hospital about 9 am. Linda was sleeping in the new bed when I arrived.- Linda's color is still good, but she appears tired, and the pain is affecting her more than yesterday. When she is awake she is either groggy, or irritable. Not a good day; certainly not like yesterday.- Two speech & swallowing specialists (Melissa and Amy) check Linda's throat and mouth. They recommend that she continue to avoid liquids (especially juices or tea), and stay with soft gelatinous foods and drinks. - Caught Dr. Loren in the hall. She agrees with our decision tree of Loren/Marcia discussing medical options, and immediate family having final decisions. She understands that we should keep all options open.- Doctors Svoboda, etc. arrive. Linda woke and followed the discussion, but did not participate as she did yesterday. Her numbers are fairly steady, her bilirubin is slightly up, and her diarrhea is decreasing. Dr. Svoboda emphasized that she needs to eat more. They will start her on a pill that should increase her appetite, but make her drowsy.- By 10:30 all Doctors were gone, and Linda was fast asleep. About 2 pm she woke and ate some chocolate ice cream, and then went back to sleep.- At 5 it was time for her pills, along with some pudding and a bit of water.- I leave at 7 with Linda sleeping again.

- Arrived to find Linda sleeping. She is looking better than I remember; less yellow and some color to her cheeks. She woke up an hour later when the Doctors arrived, and was entirely aware and coherent.- Doctors arrived about 11:15 (Doctors; Svoboda, Singh, Kramer and a nutritionist), along with 3 nurses. It was quite a crowd. Vitals continue to be normal, Bilirubin is down to 8.0, unfortunately white cells are also down (they are adjusting IVs to compensate). Dr. Svoboda is happy with her situation, and discussed her continued care. Linda was wide awake, and participated in the entire conversation.- Got some info from Dr. Singh, and the latest lab results for Marcia to review.- The nurses took advantage of the good day to treat a bed sore and replace all the old bandages. They will bring in a better bed tonight so that Linda will have less pain from the long bed stay.- Since Marcia has a night out starting at 7, I leave at 4:30 to have time to review the info I gathered.- Stayed at Marcia and Larry's house Thursday night.

Thursday, November 17, 2011

We arrived around 9 AM. She was happy that we arrived early but was somewhat depressed. It is hard to watch but we kept on remembering our conversation we had with Marcia last night. She reminded us that it is hard to not feel well for so long, but the goal is for her to get better and she tends not to remember what she has been through.

There was blood in her stool again. She was very tired because she said they didn't let her sleep last night. I must admit, the nursing staff is amazing. Today there were as many as 3 nurses in with her. She is high maintenance and they are on the ball.

They have been giving her blood and platelets during the day. They are going to introduce Tacalimis today twice a day. I guess things are not moving along as quickly as they would like. Dr. Kramer came to chat with Linda. Of course Linda asked his background. He is an MD and has a PHD. Not shabby!. I believe he is one of the leads and spoke to Linda about some options. She didn't care, just wanted to sleep and for us to listen. The doctor was persistent and she asked "If I was your mother, what would you suggest?". The three options:

1. Give more aggressive blood, platelets, and another endoscopy. Both he and the gastro dr's thought it was not necessary and nothing new would be discovered. 2. Just more blood and platelets and see if things improve, again.3. Swallow a capsule which will take pictures and pass through her track within 3 days. If they seem something, they won't be able to do anything.

We all agree with option 2, including Lee. He was going to check with Dr. Loren to see if she agrees. Again, she asked at least three times if she was dying. The doctor answered NO to each one. I like that answer.

The resident tried to put an IV in her neck but could not find the vein. He could not find one in either arm either with an ultrasound. They called in the picc line team and they put a second picc line in her left arm. She was a real trooper and again the team was great. The team commented how much better she looked than last week. She also said it was more important how she looked, not felt. Interesting....

She was on pain meds most of the day because of her stomach. They also took her off food to rest her gut. Before that, she wasn't eating much but I was pushing her! I also had her wiggle her toes, move her swollen feet around in a circular direction and actually raise her foot off the bed ever so slightly. The night CNA said he will work on her pushing her own pain med button. It is now important for her to start moving.

Tuesday, November 15, 2011

Linda's color looked good, and she carried on a clear conversation, but she talked slowly and seemed tired. I believe her occasional depression is more of an unknown feeling, the doctors not knowing if/when she will be better. I don't think she is giving up even though it is getting old. She said she was depressed this morning and would not work with the physical therapist. She wanted company and we were not there yet.

She had a doplar yesterday of her arm, and has been diagnosed with a non occlusive clot It is not in a deep vain and therefore considered superficial. It is not being treated.

Her bilirubin went up to 12.2. They said don't look at the bili since it takes a long time to decline and lags behind the liver improving.

She no longer is growing bacteria in her blood. Infection is under control and she is talking more clearly. They are waiting for the GVHD to improve. Her liver function is stable but not getting better. They are discussing a liver biopsy, and promised she will be heavily medicated if one is needed.

She had another dose of Ritoxin last night. Her white blood count is down. She is very mildly neutropenic. They will be starting Neupogin. They will give her tylenol if she needs it for the pain.

She has lost weight and they may resume the feeding IV. They prefer not to since it may cause an infection and affects the liver.

They may start Tacalimis. It all boils down to treating the GVHD while avoiding an infection. A real balancing act.

Linda was awake and heard the doctor's report. When I read her the email recording the meeting she had no recall of the conversation. As Lee and Marcia said, she forgets, we don't.

Monday, November 14, 2011

I enjoyed a big greeting from Linda when I arrived at 9am. It was wonderful to see her so spunky. We talked a lot, and she recalled stories in impressive detail. She didn't take any naps.

The doctor said there were 3 things to concentrate on today:

1) --A PT would visit later.

2) --Another Retuxin infusion would be initiated.

3) --A liver specialist would evaluate her to determine whether another biopsy is necessary. Her liver enzymes are dropping,… but slowly.

He also ordered a Doppler test for her swollen arm.

Except for a little belly pain, a sore buttock from sitting so long, and a beat-up arm, she was much better. Her color has improved a bit since last week.

Meredith, her speech pathologist, evaluated her swallowing and recommended she stay only on thickened juices and pureed foods. Linda did not agree! She drank 8 spoons of a milk shake. Linda has difficulty with straws but is good if spoon-fed. Later, Linda requested ice cream, and ate half the container. What a nice improvement!

Dilemma: She needs to sit near 90 degrees so she doesn't aspirate food, but the more she sits up, the more pressure there is on her sore backside.

Her kind, attentive nurse, Dennis, mechanically re-positioned her several times to relieve the pressure on her bottom.

We did ankle rotation exercises and lotion massage of her feet and legs to get the

circulation moving and bring down the swelling.

Dr. Neal Dicker stopped in for a surprise visit. She was happy to see him.

Note: The clock in Linda's room was never changed for Daylight Savings Time. Believing it was 3pm, I ran out to make a class in Allentown, but it was really only 2pm. Oops!

Sunday, November 13, 2011

Donna Anthony visited Linda today. The following are notes from a conversation with Lee. Any mistakes or misunderstanding are my (Lee's) fault.

- Linda looked better than the last time Donna saw her, which was during the snow storm 2 weeks ago.- She had a spot on her neck that looked like she had scratched herself (it may be the leftover from her neck IV). She was also not happy with the pressure sleeves on her legs, but they will have to stay until the legs are less swollen.- Linda was talkative, but tired easily. She wanted to hear news of friends and neighbors, but obviously had no news from her side. She was clear headed and understandable during the entire visit.- She drank some thick sugar water spoon fed by the nurse and Donna. She liked it, and asked if Donna wanted some (Donna declined the offer).- The trip down had a lot of traffic, so Donna had only limited time with Linda. Even so, Linda said that she wanted to sleep, and sent Donna home after only an hour. She said goodbye, and seemed to fall asleep almost immediately.- Let's hope that her strength increases, and that she can begin some Physical Therapy.

Saturday, November 12, 2011

Linda was awake when we got there. I heard the Vishvinetsky's were there this afternoon earlier. Linda had some trouble remembering that, but her nurse reminded her and then she was talking about the visit. :) She was alert and awake when we arrived and looked pretty good as compared to last time I thought. About 75% of what she said made sense. But she mentioned several times she gets mixed up and is sometimes not sure if what she is thinking is a dream or real - so I think she knows that she is having trouble. But she asked us to keep her awake- she said she is up most of the night so she wanted to stay awake. The nurse was feeding her ice cream when we got there. She wanted another and I gave her about 3/4 of another container. She said she liked the cold feel of the ice cream. She asked twice for pizza- said the nurse would get her some-to be honest, not sure if she really wanted that or not but judging from her choices on her meal menu it doesn't look promising for pizza this week! :) I would have happily went for some if she could have had it. She was extremely appreciative of the visits from everyone and got a bit teary thanking everyone. About 7:20 she started to get really drowsy, asked us to turn off her lights and we left. She said she was good and was going to go to sleep. Left her asleep. The nurse told us and Linda that next week she would be back on PT therapy and trying to get her moving. Overall, a nice visit I think, and glad we went. Let's hope it is a good week coming.

We came to U Penn around noon. It took us 2 hours to get there; an hour to get to the exit and an hour on I-76. When we arrived Linda was peacefully sleeping. She woke up when we stepped into the room. She was happy to see us and wanted to know all our news. We had a lot of news about snow and power outage; surviving the cold, staying in her home, etc. She liked my stories and kept up her end of the conversation. When I mentioned that Lee liked my borsh (Russian food like soup), Linda said she and her mom want to try it too. I promised to make a big pot for the whole family when she gets home.

She was awake all morning, but was pretty tired. Her mom called, but Linda wanted to go to sleep. I talked with Barbara for a few minutes. Linda wanted to talk to Robbie, and I said I would get in touch with him.

I gave her some orange thicken juice and 2 pieces of pasta from her lunch. She slept for a while but woke up when the nurse changed her IV medication. Linda wanted to know what was going on, what medication she is getting, what else she will get today, etc. She likes to be fully informed,

They checked her vitals which were very good, Her blood sugar has increased because of the steroids, and the nurse gave her an insulin shot. When she gets off steroids her blood sugar will be normal again.

Her liver function is not normal yet. It's not dangerously high but will take a little bit more time to get back to normal.

She slept a little more. Then Robbie called and she was very happy to talk to him. After that she called Emily and her mom.

Linda remembers all her friends, and appreciates everybody's help very much.

She wanted to get cold water, but they need to thicken it. I gave her this water and she enjoyed it.She did not eat much while we were there, I hope she will have a good dinner.Before we left, Linda asked when Lee was coming, She counted that it will be in a day (Monday) and was happy.

Overall, she is on a recovery track, the nurse said the same thing. It will take some time and probably will not be easy, but it will be done.

Friday, November 11, 2011

Arrived just after noon to find Linda sleeping peacefully, so I sat down and read my book. She woke not long after when the nurse came in. The nurse told me that Linda is very curious about everybody, and that she knew that her boyfriend knew Robert at Harvard. Linda just smiled, but did not join in the conversation. After more sleep Carla called, but Linda did not want to talk. Carla thought that she was tired from yesterday's exertions, which sounds likely.

About 5pm Linda wakes completely and we talk about Emily (she doesn't remember her visit), Robert and what is happening at home. Emily calls on the cell, and Linda has a short talk with her. I get Linda to wiggle toes and fingers, and move her neck and shoulders. She is talking quietly without pain; with a clear head, but with obvious sense of being tired. She is also starting to get pushy and impatient (a good sign).

About 6 she is getting hungry, but dinner is late today, so I get some chocolate pudding and feed her a couple of teaspoons of it. She hates pudding, but she eats it. She is allowed to eat now, but only a "pudding" diet; everything has to be soft and mushy, and I believe they are still avoiding milk products (ask nurse). Her stomach lining is very sensitive right now, and they are trying to get the GI tract started without irritating it.

Supper finally arrives at 7:30 and she eats a few spoonfuls of mashed potatoes, lemon merange pie, with a syrupy cranberry juice. She had some stomach pain after eating, but not too bad. The nurses cleaned her up and refreshed the bed, and she fell asleep again about 8:30, at which time I left.

What a difference a day makes! My mom and I walked in to see her talking with my cousin Janet for the last 45 minutes. Janet said she was clear, concise and gave her an earful, telling what was on her mind. Even though she got a little tired, she still participated in all our conversations all day long, giving her editorials along the way. It was so nice to have her back after having such difficult days.

Her numbers are basically staying the same even though we would like to start seeing improvement. They did say her infection was under control which is why she was much more alert. She was quite fearful of the endoscopy, telling the nurse to "just do it already". Mom and I stayed until she was back to the room. When she saw us, she had a big smile on her face. I am sure it was relief.

Her skin and eyes are still yellow, her bilirubin in not creeping down, yet. However, the doctor said it was not an unsafe level. It can take up to 2 weeks to go down post infection.

Thursday, November 10, 2011

Emily and I visited Linda today. We arrived at 9am. It was a particularly hard day for Emily, but Linda was quietly glad to see see her...Linda smiled when Emily walked in.

The bad news is that Linda is in worse condition than last time I visited. The good news is that the nurse said she seems better and more calm than yesterday. A step in the right direction.

To please me, Linda took a 1/4 teaspoon of the delicious fruit smoothie I brought, but her facial expression indicated I was feeding her week-old liver. Oh well, I tried.

Linda was yellow-toned and not inclined to speak. The few times she was responsive:

1) When I told her my daughter was accepted to nursing school, with her eyes closed Linda repeated about 20 times, "So wonderful".

2) When her great nurse Meghan told Linda that Carla called the desk, Linda said "Tell her I love her".

3) She said a touching goodbye to Emily.

4) She had just a couple of slurred words for me when I left for the day.

A doctor came by with concerns and said that they will probably be re-inserting the pik line by tomorrow. Although they delivered lunch, she ate nothing.

Emily and I had lunch while Linda went for a head CAT scan. Emily spoke with her Mom a bit, then left for the bus at 2pm.

Linda slept almost all day, while I read the excellent new Steve Jobs book. When I told Linda that Lee and Robbie would enjoy this computer-themed book, she nodded and smiled.

After saying good-bye, I left the hospital at 3:30pm. Linda was asleep again before I hit the hallway. I hope Linda has a better day with Carla tomorrow.

~Heather

Addendum: Late in the day Linda (with the nurse dialing) called me (she also called her mother and sisters). She spoke clearly and rationally. Ironically, knowing what she has been through the last couple days, she was worried about her mother, and was surprised that I was upset by her situation. She did not stay on long, but it was heartening to hear her again, sounding like the old Linda. -Lee

Wednesday, November 9, 2011

It was a hard day for Emily (Linda's daughter, visiting from U Pitt). She broke down when she first saw Linda; it was the first visit since the summer. Linda was very happy to see Emily and wanted to hear all her news. The rest of the day seemed to be OK until it was time to leave. The nurses were putting in a new IV, and Linda was in pain and extremely uncomfortable. That was especially hard on Emily. Lee was able to calm down Linda and she fell asleep before he left.

Marcia said that Linda is still infected but the culture is negative. They will wait 48 hours and then put in a new picc line. The source of the infection was the gut lining which is inflamed, and is allowing bacteria to enter the blood stream. Bacteria likes to stick to plastic and antibiotics cannot tackle plastic, therefore the plastic picc line had to be removed.

Her mental state is a result of all that she has been going through. Everything contributes to her being delirious and her craziness. Regarding her brain, there should be no permanent damage. She should come back 100%.

Regarding nutrition, she lost the picc line and they do not want anything going into her gut yet, so it will be 48 hours before they can do anything for her.

Best case scenario, they get the GVHD under control and the gut gets working. Worst case, fighting the GVHD brings down the immune system and they expect infections. The antibiotics undermines fighting the GVHD with steroids. If both hit the wrong way long enough, they run out of room to maneuver.

Dr. Loren said she thought Linda could pull through this. She is young and healthy. Stress and the long running medications can lead to heart problems, but that is not an issue with Linda since her vital signs have been normal. Bottom line, there is a reasonable amount of hope and Dr. Loren thinks she can recovery even though she is still very ill.

Good news 1, white blood count is going up nicely.

Good news 2, Linda will not remember any of this. (Unfortunately, that isn't true for the rest of us!)

Tuesday, November 8, 2011

Mom (Barbara), Jenna (niece) and I (Carla) visited Linda today. Unfortunately it was not a good day - we wish it had been otherwise.

Her infection and bilirubin count are still a challenge. The infectious disease doctors are scheduled to visit her today. She still has a yellow tone and slept most of the day. However, we only needed to push the pain medication button once while we were there. She is no longer getting the constant dose.

I was the happiest when she asked Jenna who she was calling (Jenna was looking at her bb) and smiled when Jenna told her stories from work.

Sunday, November 6, 2011

In the morning Linda was half asleep, getting agitated at times and talking incoherently (many requests about sending/receiving email). Later she was more alert, still confused, but realizing that she was confused. She refused to eat lunch but had some high calorie ice cream. Her nurse also mentioned that she should be encouraged to drink the Ensure shakes, as they are high nutrition and she is no longed fed intravenously due to the infection.

Later in the afternoon the doctors came by. They said they might add an additional dose of Rituxin this week and that it takes some time to see an effect. They also mentioned that the liver issues are multifactorial, affected by the GVHD, infection, and other issues. Her bilirubin levels remain high.

Saturday, November 5, 2011

Linda was started on an antibiotic yesterday at 6 pm, and the nurses say that she is mentally doing a lot better. She is somewhat confused and doesn't always make sense, but a big improvement over her state on Friday. The labs came back today, and they did find a bacteria in her blood, so they will be adding a second, more tailored antibiotic later today. They took out the central lines, and replaced with peripheral, as the central line can often be the source of bacteria.

Her liver function is the still the same, as the medication takes several days to kick in. Her nurse mentioned that they took out the PICC/nutrition line, which can also affect liver results.

Friday, November 4, 2011

Lee's frustrating Friday:
I left Marcia's house at 7:30 and arrived at the hospital at 9 (2 accidents and 2 construction delays tripled the travel time). Linda was not improved from yesterday, being jaundiced, tired, confused and in pain. Dr. Kim stopped by in the morning to see Linda. She was sad to see the relapse, but could not add to what I already knew about the situation. She did tell me that Linda's fingernails (which are curiously formed now) are that way because of the stress of the GVHD attack a month ago. She told me not to worry because they would grow out normally in time.
Dr. Stadtmauer arrived at noon, and was not happy with Linda's condition. The Retuxin is supposed to improve the situation, but it has only been two days since she started it. He is concerned about infection (which would not be noticeable given her current condition, but could be causing her listlessness), so they are going to take a chest x-ray and blood tests to rule that out. They will also lower the pain meds, which might be causing drowsiness. Her white blood count is up, which is probably due to the Retuxin's side affect. The bilirubin is still high, and will probably stay high for a couple more days until the Retuxin has its effect. He said we should be seeing an improvement from the new meds early next week. He is still optimistic about Linda's eventual recovery.
Linda continued to sleep fitfully, and I said goodbye at 2:30.
PS I thought an early afternoon drive would be easy, but apparently Fridays are "special". I spent 2 hours going 10 miles on the Schuylkill, and then another slow hour on a crowded thruway extension. Three hours on a normally 1 hour trip. I'm going to bed. I hope Linda can get some real sleep too.
- Lee

Addendum: Dr.Loren visited Linda after I left, and gave Marcia a call who just gave me an update. Dr. Loren expects that Linda's listlessness is due to an infection. The chest x-ray did not clearly show anything, but the blood tests will. When the blood tests come back in a couple of days antibiotics will be started immediately. The upside of this is that an infection will be cleared up quickly, while a GVHD problem is more complicated.
- Lee

-I arrived at noon. Linda had jaundice as Carla noted yesterday. She was also semi sleeping, and mumbling incoherently. She is still bloated in her arms and legs. Upside, her skin, lips and mouth are clear, and most of her numbers are normal.- She is not eating anything at this point, but is drinking ice water occasionally.- The Retuxin was administered yesterday, but it's effects take time, so the jaundice and liver problems won't go away soon.- She slept from 2:45 on, although she woke periodically from pain. - The nurses woke her at 6 to give her meds. She is on 10 separate meds now.- she fell asleep again and I left at 7. Went to Larry & Marcia's house to sleep (many thanks to them - it would be overwhelming to try driving more than I am already).

Thursday, November 3, 2011

Mom (Barbara) and I (Carla) visited Linda today. Unfortunately it was not one of her better days. Her gut has shown improvement but her complexion is yellow because her bilirubin count is elevated. She didn't talk much and needed pain medication throughout the day. They started a new medication tonight to tackle her liver issues and white blood count. Let's hope that is going to be the magic bullet.

Mom baked cookies last night and brought them to Linda after Lee told us she was eating Lorne Doones all day yesterday. Linda's reaction? "Why do you want me to eat cookies?" Needless to say, she was not herself.

Tuesday, November 1, 2011

-Got to the hospital early today, 8:45, having slept at Marcia and Larry's house. Linda had already been taken out for her ultrasound test.-Linda was back by 9:30. She was in a "loopy" state, and has considerable pain.-The physical therapist dropped by; said that she had tried to get Linda up yesterday, but she had refused. She promised to return later when the pain had subsided.-Linda had several cookies with water, but didn't touch the breakfast (an egg muffin riff).-They have a student nurse (supervised) checking Linda's vital signs.-Physical therapist came back and got Linda on her feet. She shuffled forward and backward, "dancing" with the therapist. She had some pain, but her heart rate and breathing were normal.-Dr. Stadtmauer and his gaggle of residents came in around noon. Said that she was looking good, and most of her numbers are good. He said it might be that the GI tract was being held back by the meds, so they are looking toward reducing the meds slowly. He said that they were going to start Retuxin(sp) which would lower the Bilirubin, and would coincidentally raise the white cell count. It has side effects, so they will be monitoring her closely. The donor T cell % has been tested, but the results take 2 weeks, and are not back yet.-Lunch was salad with sliced chicken cutlets. Linda ate the croutons and some graham crackers. -She fell asleep, telling me I could go. I left about 1pm.

-Arrived about noon. Marcia was already with Linda, and was quizzing the nurses on the test numbers she had. She eventually had to leave for a doctors appointment, and left me with a couple questions to ask the doctor if I saw him.-I talked to one of the assistants to Dr. Stadtmauer who gave the following... 1. Bilirubin has increased: they have scheduled an ultrasound of her liver to check for any blockage - if there is no blockage then it is GVHD, and they will treat it as such. 2. White blood cell count is down: will be testing that also to determine treatment. 3. Donor T cell %: he had not seen any results on that.-Linda was generally in good mood. Had lunch of water, lemon ice and noodles. She made sure everyone knew that she hates noodles. Nurse promised to get some rice for her.-Nurses said that she was allowed to eat "anything", but the smart choice would be a "brat" diet and clear liquids. She isn't digesting anything yet, so they are looking for a regeneration of the intestine's "flora". Once her gut starts to process the simple foods, they will go on to other foods.-Linda began to feel more pain around 2pm. She used the pain button, got "loopy" and fell asleep about 3pm.-Supper arrived 5pm, but Linda sleeps on. They are serious about eating anything. Supper included boneless pork chop, corn, mashed potatoes, rice, toast, a piece of cake and ice tea. I was very sorry that I had already eaten.-At 5:30 the snack cart came by and woke Linda. She scored 4 packs of Lorna Doones. She had cookies and ice tea for supper.-6:30, lights out, but Linda is still talking to everyone. She loves to question and banter with the nurses and aides.-I leave when Linda falls asleep again at 7pm.

Sunday, October 30, 2011

The Vishnevetskys visited today. The following are notes from a call after the visit (power and internet was out at the Vishnevetsky residence):Linda is looking very "Linda". She does get tired and has pain, but other times very normal.She liked the "get well soon" balloon, and enjoyed the news from home (snow storm).She talked on the phone to family, and seemed to enjoy it.She is continuing the clear liquid diet, although they let her have some cereal (I don't know how that worked since she can't have milk).Anyway, another positive report.PS Donna Anthony drove down Saturday ahead of the storm and also was happy to see Linda so much better.- Lee

Friday, October 28, 2011

Written by Paula and Barbara (mom), typed by Paula. This will take me forever on my mom's iPad, but here goes......

We (Paula and Barbara) arrived about 11 am. Her appearance was much improved, and she was chatty and more coherent than the last time we had seen her- 2 weeks ago for Paula, and 3 days ago for Barbara.

She demanded food and something to drink throughout the morning, saying she was starving and wanted Hagen Daz. The nurse said she would have to wait until she talked to the doctor. Fortunately, they were making their rounds and came in. The attending doctor said she was responding nicely to the treatment, and therefore they don't feel the need to change her drug therapy to a stronger steroid (they had planned to do so if she didn't improve by today. The doctor didn't agree to the ice cream request, so she settled for the clear, liquid diet plan. She had a few spoonfuls of jello, broth, cranberry juice and lemon ice. I think the anticipation was more exciting than the actual consumption. oh well....it was still the highlight of the day!

The doctor said she really needs to sit up - a chair would be best. But,she wasn't allowed do it without a physical therapist being there. Apparently her heart rate, etc needs to be monitored while she is up since she hasn't,t been out of bed for almost three weeks. We left around 3pm. Physical Therapy hadn't come yet. But Linda was napping when we left. All in all, it was a better visit than either of us was expecting.

When we called the nurses station tonight, they told me that PT didn't come today, but will be there tomorrow. We hope so.

Thursday, October 27, 2011

I arrived at U Penn Hospital about 9:30. Linda was awake and alert, talking and listening the whole morning. I was curious to hear the normal Linda, while seeing that she was still in bed with tubes run in and out. Her memory of the last 3 weeks is weak to nonexistent, which is another peculiar aspect of the situation.Dr. Stadtmauer (sp?) came in with 5 residents late in the morning. He said her numbers were good, and she looks great. He noted that her stool liquids were slowing down (good sign), and that they would be adjusting the IV liquids to match that. She has had some swelling in her arms from water retention due to the IV vs stool mismatch, so this should help that. He thought (but did not promise) that she would be able to start eating and drinking early next week. He was generally very happy with her progress. Side note: it was fun watching the verbal sparing between the doctor (from NJ) and the patient (from Brooklyn).She has been lobbying for the removal of her biopsy stitches, and they did that this afternoon. They also gave her some sugar water IV to counter a low blood sugar. The afternoon was rougher, with more pain and drowsiness. The PT person came and got Linda on her feet, but the movement seemed to increase her stomach pain. The afternoon was filled with sleeping and discomfort, on and off clarity, and general crankiness. She insisted that I leave around 4 pm.Visitors should ask the nurses about cleaning/rinsing Linda's mouth, since it gets dry and "cottony" very easily. The foam rubber swabs dipped in ice water help when she is uncomfortable.- Lee

Wednesday, October 26, 2011

> The thruway extension becomes simply I 476 at the I 276 connection. Toll Plaza there, stay far left if you have Easy Pass.> Continue on I 476 going south until you get to I-76 exit. Stay in the left lane of the exit to get on I 76 going East (about 42 miles total from Allentown)> I 76 east takes you straight into Philly. The left lane exits to I 676 (12 or 13 miles from start of I 76)> Stay on I 76, and about one mile past the I 676 exit be in the left lane and take the exit for South St. At the top of the exit turn right onto South St.> At the next light turn left onto Convention Blvd. About 50 yards on is another traffic light. Immediately after the traffic light turn right into the Penn Towers Parking Ramp.> (they may have that entrance closed. if so, continue forward and around the corner to enter the parking ramp. there will be signs).> Take the elevators to the Bridge Level. that will lead you straight on over a pedestrian bridge into the hospital.> There is a security point and info desk not far past the pedestrian bridge, but you can simply continue to walk along the corridor to the end, which will have the Rhoads Pavilion elevators.> Go to the 6th floor. Linda is second room on the left (room 6002).

They don't allow fresh fruit or flowers, and if you have a cold they have masks. Otherwise no restrictions.

considering a new medicine (along with her 9 IV bags), which will target the intestinal inflammation. We propped up her swollen left arm on pillows, which helped her edema and arm pain. We did foot massages

and ankle rotation exercises to bring down her puffy feet and

get her circulation going. At 1:30, she thanked me and expressed how

deeply she appreciates EVERYONE'S support, and told me in no uncertain

Tuesday, October 25, 2011

Carla and Barbara visited today:Linda is looking better, and is sounding more coherent.She is still occasionally talking in a depressed way ("I'll never get better"), but this will pass as she improves.The liquid of her diarrhea seems to be slowing down, and is less colored. A good sign.Pain is still a problem which the doctors are working on.If her gut does not improve by the end of the week, they intend on changing the med approach.Generally an optimistic visit.

I visited Linda this morning and have to say that she looked SO much better than last week.She was much more oriented (although not completely consistently) and was interested in talking and interacting. She did not seem depressed,only wondering how much longer it will be (no one can say,of course).She told the nurse to tell me everything so I was able to see her labs. Most of her chemistries are in the normal range although her liver function tests have not changed much in the past few days and remain mildly elevated (this is not unexpected).Her current team came around when I was there and I was able to speak with them. At this point it is mainly a matter of waiting for the gut to improve.Dr. Loren said that if it does not by the end of the week they may add some meds.Marcia

Lee was there this afternoon:

I arrived about noon. Linda was sleeping peacefully, so I waited. She woke about 1:30, and was quite normal; talkative, animated. She insisted on hearing about all that had been happening in the last 2 weeks (which she thought of as 2 years). Reminded me of names that slipped my mind (very normal Linda).By 2:30 she was tired again and in pain. They were trying to limit the pain med, but she was not happy, so they have hooked up the self-med pain button, and upped the amount she was getting.By 3:15 she was dozing in and out of sleep. Still complaining of pain in her gut, but that slowly trailed off and she was sleeping soundly by 5:30.I left her sleeping at 7pm.Lee

Sunday, October 23, 2011

I know you talked to Tim already but we are back. I wanted to stay until she got another dose of he pain meds in her. Overall, she was pretty alert- and I thought seemed to be pretty clear- talked about my job, asked me about Kelly's boyfriend, wedding dates etc- all stuff I wouldn't have expected her to think about- and she actually did talk a fair amount- I was surprised. I told her not to feel she had to talk and sometimes she did and sometime she closed her eyes but wasn't asleep- she is obviously weak. But she did say she was happy to see me there every time she opened her eyes- so I hope it helped her in some way. She asked me to get the nurse for her meds twice, cover her up, etc - but the nurse told me she was more alert this weekend. I had nothing to compare to so I am not a good judge. She got pain meds about 3:30 and a few minutes before 4 she was sound asleep - i whispered I was leaving and she didn't even stir. Considering she was alert most of afternoon (we got there about 12:30) she may have been tired. I felt OK leaving her at that point. A doctor was also in while I was there- she said they were happy that Linda was less confused and they were trying to balance pain med dosage and wanting to maybe keep her more alert- she was asking Linda how the meds were working. I could tell toward the end of the two hour period between both times- Linda did start to say she was in pain- and they gave her meds at that point. I made sure the call button was right at her hand before I left so she could get them. And it is nice she is right by the desk- they heard her call them! She did complain about her mouth being dry -it must be yucky she cant drink anything. I got the nurse who had her rinse her mouth with stuff, then with some ice water, then put some stuff on her lips because they were pretty dry. She also got an injection for diarrhea and another for insulin when I was there. Poor thing- she is a trooper through all this. I had absolutely no idea it was as bad as it must have been- since I suspect she was even much worse. I hope I got all this straight for you. Thanks for the updates too.

Linda appeared better than last week. She was cognitively sharp, although there was stomach discomfort. The doctors have reduced her pain medication to every two hours in an attempt to reduce side effects (confusion).

She received an infusion of platelets to reduce GI bleeding. This resulted in an expected reaction (hives, swelling, etc) which was counteracted with Benadryl and was followed by general drowsiness / grogginess.
- Robert